Friday, October 26, 2018

Today is Rita’s birthday, so, while we want Mom to go as soon as possible because she is unhappy whenever she wakes up and sees she’s still here, we hope she hangs on until tomorrow. Two days ago, not knowing what her situation would be in the days ahead, Mom rallied briefly and sang “Happy Birthday.” Rita listened, her smile wide, her eyes glistening, but we all had to chuckle when Mom wrapped up the song with “Happy Birthday dearMatt….” Ah well. We knew what she meant.Right now, she is snoring softly, thank god, fast asleep.

Two days ago, frustrated with what was, to her, a snag in her passing, she keyed into the refrain her doctor, nurses, and Hospice staff have repeated: “You can do whatever you want. You can refuse food and drink.” We have all learned that Morphine does not hasten the end; that common belief has evolved because it’s generally the medication patients are taking at time of death. So, exercising the tiny area over which she still has control, Mom has stopped eating.

She has been here at Muirfield for a month… as have we. Dave, Matt, and Bill have been extraordinary in supporting us and keeping everything chugging while we girls stay with Mom. The men have done laundry; run errands; cleaned house; cooked delicious dinners for us… and more.

Yesterday, I left Dave asleep at 638 when I headed out to take the morning shift at Muirfield. I clicked the “unlock” button on my car key and… nothing. Must have pushed the wrong button. Tried again. Listened for a hint of an engine purr. Nothing.

“Please, oh please...” I begged while stabbing the button about twenty times. No luck. Still nothing.

Argh! I love my hybrid C-Max, but she has failed me before, and this was really bad timing.

Fighting tears, I stomped back into the house, up the stairs, and woke Dave.

“My car’s dead!” I wailed.

“Ugh. Bummer. Give me a minute to get dressed. I’ll give you a ride over, then call AAA,” he said. Poor sleepy guy. I knew he’d say that. So many times he has lifted my burden and made my problem, his. He delivered me to Muirfield, and spent the next four hours dealing with multiple glitches, finally getting the car started, and then, with Matt, driving aimlessly for half an hour to make sure it stayed charged.

* * *

Mom has gone without food or water for five days and has slept most of the time. The nurses and Hospice staff tell us that despite all appearances, Mom can hear us. So Rita reports on her birthday dinner; I vent about my car; Francie reads aloud the inscriptions in cards when they arrive. To give us a break, Dave took the late and early shifts yesterday. He says he loved having time alone with Mom to tell her what she meant to him, things he wished he’d told her sooner… for it has seemed, increasingly, that she is far away.

Dr. Spitzer has been on vacation. Having returned, he has come in to check on Mom. He stands at the foot of her bed and gazes at her. He turns to leave and whispers, “I don’t want to disturb her.”

“Wait! Talk to her,” I say. “Let her know you’re here.”

He sidles up close to her head, strokes her hair, and quietly says hello.

Mom opens her eyes and mouths, “Hi Peter…”

We all look at each other, wide-eyed. Wow. Wow… She’s still here! Despite what we’ve been told, we haven't really believed she’s heard our whispered love, assurances, and appreciation… but, she has!

* * *

March 1

1:02 AM

Dave has returned to Easton, and when not at Muirfield, I am happy here, alone at 638, surrounded by portraits, Persian carpets, needlepoint pillows, and vintage posters: vestiges of my grandparents, great-grandparents, and Mom and Dad. My sisters dislike the musty smell, but I love it. It wraps around me, the scent of family history, and I envision all those lives that led up to mine, and am comforted.

When I mount the well-worn, carpeted stairs, I trail my hand along the bannister and then the walls covered with the same paper hung when we first moved in over fifty years ago. “Hello dear house,” I murmur. At the landing outside my parents’ room, I call, “Good night, Mom…” It’s easy, not hard at all, to place her on her bed in her room, her favorite, cozy spot.

In the guest room, I wash up, then slip into bed under the crinkly white and pink-monogramed bed covers. My gaze falls, as always, on my great-grandmother’s green velvet rocker and delicate lady’s desk. A needlework picture of a grumpy grandfather and little girl carding the wool of a compliant sheep hangs on the facing wall. For years I have slept here. Even as a teenager, I’d tiptoe down the stairs to this room when my third floor bedroom seemed too dark or too far from Mom and Dad.

With Mom soon leaving, and this house no longer mine to come home to, how can I pay attention enough?

At 638, Mom is everywhere. Sitting in one of the white plastic kitchen chairs watching Jeopardy or standing before the 1928 Roper stove. Sipping her white zinfandel in the den, surrounded by shelf upon shelf crammed with family pictures. Stretched out on her bed, flipping through People or Majesty magazines… or ear to phone, keeping up with her friends.

Oh Mom! Despite all the CAT scans and hospital time, the cards and flowers, the vigil at Muirfield, the wretched days and this long stretch of sleep… it seems a terrible fiction that you won’t be here.

Who will recommend books knowing I will like them? Who will be as eager to hear the latest tale of a St. Anthony find? Who will answer the phone at 4997 for a cheery, chatty phone visit? Who will relish, as much as Dave and I do, the latest on our kids and their families?

You have to know, Mom, how fortifying this time has been for me, Rita, and Francie together. Who would have imagined, after a half century as sisters, that we could get to know each other better? But we have… and they have been stalwart, brave, and dear. I am so grateful for them! I think you must be proud of us… Do you remember what Francie said to you the other day? “We’ll be okay, Mom. We’ll be there for each other as friends and protectors…” And we will.

Friday, October 5, 2018

As soon as they learned of Mom’s illness, Tucker and Lisa booked a flight to Philadelphia for Martin Luther King weekend. After her own stay, however, Casey worried that Mom might not last that long and urged her brother to squeeze in an earlier visit.

While Mom knew Tucker was there, she slept most of the time. We felt badly since he’d flown in for the night, would head back to Boston on Wednesday, then return Friday with Paul and Lisa. But Tucker had steeled himself to see Mom in misery and was relieved when she seemed peaceful and comfortable.

We all looked forward to Tucker’s return with his wife and Paul. Mom was eager to see her great-grandson, but didn’t want whatever hazy memories a two-year-old might retain of her to be that of sick-Greemie.

Who could have foreseen a child’s perspective of Muirfield?

For a toddler, the facility offered long carpeted hallways perfect for racing. It was furnished with comfy chairs ideal for climbing and forts. It contained mammoth desks tailor-made for hide and seek. And there were innumerable, kind grown-ups who, delighted by the diversion of an adorable, happy child, provided markers and paper, balloons and pipe-cleaners. For Mom, it was joy enough when Paul stood at her bedside to show her his dump truck or the drawing he’d made.

And while the rest of us remained ignorant of the news for several months more, Tucker and Lisa quietly told Mom they were expecting another child in October.

* * *

Amazingly, Mom continues to look great. Her head rests on her favorite baby pillow, and occasionally she forgets to put on her headband; I love it when she does. Her silver hair falls softly around her face and her expression is relaxed and pleasant. She says she feels totally with it, just weak, but she acts like she’s high. When she speaks, sometimes she takes off on rambling, nonsensical tangents. We listen intently for insights into her frame of mind or meaningful memories. Often she’ll catch herself, pause, and grin, saying, “I don’t think that makes sense, so I’ll stop there.”

Several times, she has realized her hands are clasped on her stomach. Immediately, she drops them to her sides and says, “I better not do that; it looks like I’m praying,” and we burst out laughing. My mother is not a religious person. At all. When in the past she yearned for heavenly intervention, she called on her parents for help… and so far, they have been successful in their vigilance.

One afternoon, Rita asked Mom what she would like covered in her obituary. As she thought it over, Mom caught herself “praying” again, and we launched into a mock write-up. “Mimi, known for her knowledge of scripture and given to quoting it.” Or, “Mimi tried to squeeze in the occasional bridge game between the Bible studies she held regularly at her lovely home.” Oh, the relief in that gasping laughter!

Recently, after the girls and my brother-in-law, Matt, headed home for the evening, I turned off the lights and leaned over to give Mom a kiss. “This is exactly what I didn’t want, “ she said, her voice distressed and fretful in the dark. “… To linger on and be a burden…”

I laid my head on the pillow next to hers and stretched my arm across her chest. In tears, I said, “Oh Mom. We’re so grateful you’re still here! We don’t want you to suffer, but this time is a gift to us and your friends. It has given everyone a chance to check in and let you know what you mean to them.”

“It has been good,” she said. “All the cards and flowers and calls. Friends coming in even if it was inconvenient.”

An inconvenience. That is so Mom. The outpouring of love and admiration has been a revelation to her. Dad was a big presence, and while Mom is stronger than he was in some ways – he acknowledged this in her nickname, The High Command – she always felt she played a supporting role. She’d hoped for a quick exit, but these weeks in Muirfield have allowed lifelong friends to fly in from Florida and drive from New Jersey, cousins to fly from St. Louis, as well as nieces from California, D.C., and Massachusetts. Her sisters-in-law have visited regularly, as have friends who live in the area. If anything, we three girls act as gate-keepers to make sure Mom doesn’t get overtired.

Almost every day, new deliveries arrive to take the place of the forlorn wilted flowers sitting on the floor by the door awaiting removal. Flamingos, blossoms, bear hugs, and yellow chicks in sunglasses cavort on the cards that line the windowsill.

Many are hopeful get-well cards; others know better and cloak their good-byes with funny reminiscences or loving words about the role Mom played in their lives. Her friend Kingie wrote, “I will miss you so terribly much… until I see you again.” My godmother, Aunt Patty, recalled their time together in Germany in 1951 as young brides of soldiers stationed overseas, and closed her note with, “Fun! Fun! Fun! And when we are together again, it will be fun forever!”

About Me

Quotes that I love

From My Grandfather’s Blessings by Rachel Naomi Remen, M.D.

“Life offers its wisdom generously. Not everyone learns. Life asks of us the same thing we have been asked in every class, “Stay awake,” “Pay attention.” But paying attention is no simple matter. It requires us not to be distracted by expectations, past experiences, labels and masks. It asks that we not jump to early conclusions and that we remain open to surprise. Wisdom comes most easily to those who have the courage to embrace life without judgment and are willing not to know, sometimes for a long time…”

Mahatma Gandhi:

“We must be the change we wish to see in the world.”

From the Desiderata:

“Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.”

An old prayer:

“Days pass and the years vanish and we walk sightless among miracles. Lord, fill our eyes with seeing and our minds with knowing. Let there be moments when your Presence, like lightening, illuminates the darkness in which we walk. Help us to see, wherever we gaze, that the bush burns, unconsumed. And we, clay touched by God, will reach out for holiness and exclaim in wonder, “How filled with awe is this place and we did not know it.”